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Published on May 19, 2016

Sharing patient records: what do citizens say?

Sophie is Project Support Officer at Involve, working principally on NHS Citizen. She believes that all citizens should be able to play an active role in the decisions and processes that affect them.

Patient records contain sensitive personal information, but they can also provide valuable insight to people who are working to improve healthcare provision. Deciding who should be able to access patient records and how is inevitably a complex issue and one that health authorities have been grappling with for a while.

It won’t be a big surprise to hear how we think this problem needs to be approached. We have written before about the ethical dilemmas arising from data collection and the importance of engaging the public in debates around data use. We have also helped civil society organisations to share their views on the risks and opportunities of data sharing and shape the Cabinet Office’s proposals for data sharing in government through an open policy-making process.

Engaging the public in an informed an open debate is also a way of exploring some of the wider societal benefits around data sharing.

This was recently demonstrated by the results of two independent citizens juries which answered the question “to what extent should patients control access to patient records?”. The juries, selected to represent a cross-section of adults in Greater Manchester, met over three consecutive days to hear evidence from expert witnesses, discuss the proposals and deliberate. At the end of this process both juries concluded with strong support for the creation of electronic patient records which could be shared for the purposes of improving healthcare provision and research, with the option for patients to ‘opt-out’ of information sharing schemes.

The juries, delivered in partnership by The University of Manchester and NIHR Greater Manchester, clearly demonstrate the ability of members of the public to consider both the positive and negative implications of health data sharing and reach a verdict based on the wider public good.

Our Director Simon Burall was at an event presenting the juries findings to key decision makers. In this video Simon, Dame Fiona Caldicott (National Data Guardian for Health and Social Care), Christopher Graham (Information Commissioner) and other experts discuss the importance of involving the public in the debate about data use and data sharing.

More information on the citizen’s juries and another video showing the journey of the jury members are available here.

Data sharing is not an issue that is going to disappear and the controversies are only going to grow by failing to engage the public now. Knee jerk reactions and cemented positions develop when people are left out of decisions. Early, informed and well-designed engagement is much more likely to produce nuanced and balanced results.

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Involve is a charity and think tank established in 2003 to improve the quality of democracy between elections. We want to build a democracy that works for everyone – that gives people real power to effect change in their lives, communities and beyond. More about Involve »